No one can fill the gap left by our son, but our baby has brought joy back into our lives

A mother who didn't tell her teenage son he was dying - only to discover after his death that he had known all along - has revealed how a new baby has filled the 'emptiness' in her life.

Friday 16 August 2019

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A mother who didn't tell her teenage son he was dying - only to discover after his death that he had known all along - has revealed how a new baby has filled the 'emptiness' in her life.

Namrata Pandya, 39, from London, was left devastated when her only son Khushil, 14, died from a brain tumour two years ago.

A year after his death, she became pregnant again and recently welcomed daughter Khushi in June, who she said has brought new light into her life.

She revealed: 'Khushi will never fill the gap left by her brother – that's impossible – but she fills the emptiness Bhavesh and I felt inside after Khushil died.'

When keen student Khushil developed a squint in his left eye, Namrata and Bhavesh just thought he needed glasses. But the family's world was turned upside down when Khushil was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) in March 2015, and given six to nine months to live.

The family's heartache started when Khushil had an optician check-up for the squint in his left eye. After the examination found swelling behind his eye, he was sent to an eye hospital and then to his local hospital.

The following morning, an MRI revealed he had a brain tumour. The scan was sent to University College Hospital, London which confirmed it was cancerous.

'At first, couldn't even cry – I felt frozen,' said Namrata, 'I couldn't believe that in a second our happy life had been snatched away. When Khushil was little, we'd snuggle up on the settee watching his favourite cartoons Scooby Doo and Sponge Bob Square Pants. Then he loved nature programmes like David Attenborough's Blue Planet and Steve Backshall's shows.

'He was so loving and very protective of me. His smile lit up the room. Bhavesh was his partner in crime and they were always playing tricks on one another. We enjoyed holidays including trips to India to visit our families, playing board games and table tennis – we just loved being together.

'Khushil used to joke, 'Buy one, get two free!'

The couple got the worst possible news when Khushil had another scan at UCLH, revealing his tumour was a DIPG - which has no cure and no child has ever survived.

'We were told us that Khushil had six to nine months to live,' said Namrata.

She said: 'It taken me nine months to carry Khushil and give birth to him – now he had nine months to live. It was impossible to take in that nothing could be done for him. How could I accept that there was no hope?'

The only available treatment was radiotherapy which could buy them some extra time.

Namrata and Bhavesh decided not to tell Khushil he was dying because they wanted to protect him.

'It's the last decision any parent wants to be faced with – and some parents may not agree with us – but it felt right not to tell him,' said Namrata.

'We didn't want him to lose hope that one day he would grow up to realise his dream of being a scientist or zoologist. We didn't want him to stop living his best life possible.'

The couple vowed to make the most of the time Khushil had left, and drew up a wish list of things he wanted to do.

They took him on trips to safari parks, to Planet Hollywood, organised for him to meet his heroes Dynamo and presenter Steve Backshall, and even Wayne Rooney when the Manchester United fan watched a match from Old Trafford's directors' box.

Back at home after a trip to Alaska in August 2016 – when Khushil's face 'lit up in wonder' at the Northern Lights – a scan showed that Khushil's tumour had started growing again.

Over the following months, his symptoms got worse including a limp in his right leg, slurred speech and difficulties swallowing. But, despite being in a wheelchair by then, he went on his Duke of Edinburgh expedition in June 2017 and got his bronze award.

Khushil died in his parents' arms at home on September 4, 2017 and, after his death, Namrata found his diary in his book cupboard. She read an entry in his familiar handwriting after his diagnosis in March 2015: 'From day one, I knew the consequences.'

In that split second, Namrata knew that her son had known all along that he was dying, but hadn't told his parents because he didn't want to cause them any more pain.

'We'd thought we were protecting Khushil – but really he was protecting us,' said Namrata.

The couple set up the Khushil Pandya Fund with The Brain Tumour Charity to raise money for research into DIPG.

'We still find it hard to accept that nothing could be done for our son and that no progress has been made in treatments for DIPG for over 50 years,' said Namrata.

'I cannot accept there are no answers and I'm driven to help The Brain Tumour Charity give other children hope in Khushil's memory.'

Namrata revealed: 'It felt like I'd lost the light of my life.'

Inspired by Khushil's courage and the knowledge he would have wanted them to be happy, the devastated couple slowly tried to piece their scrambled life together.

The year anniversary of Khushil's death last September and Namrata's 'cathartic' book about her son, Perception, published on what would have been Khushil's 16th birthday December 8 last year, felt like a turning point.

And Namrata and Bhavesh, who did their best 'to be a two instead of a three' knew there was only one way they could be happy again. Namrata said: 'When Khushil was alive, the house was full of fun and laughter. But without him, it felt empty and we felt empty inside.

'I ached to hold another baby in my arms, to fill the emptiness inside that couldn't be filled however much Bhavesh and I loved each other.'

Their decision was backed by their GP, who had helped them care for Khushil, who told them: 'I want you and Bhavesh to be happy again- I think you should have another baby.'

Shortly after they began trying for a baby, Namrata became pregnant, revealing: 'I bought a home pregnancy test and did it at 5am when I woke up.

'When it was positive, I couldn't believe it so I put in in the drawer and went back to sleep!'

She continued: 'When Bhavesh woke up at 6am, I showed it to him and put it back in the drawer again. 'I half-thought it would say something different when we woke up later, but it didn't.'

The couple hugged each other in tears, with Namrata revealing: 'I couldn't believe I was pregnant so quickly, but it feels like it was meant to be.'

'We were happy but overcome with emotion as we remembered the moment I'd found out I was pregnant with Khushil 17 years before.'

Namrata' s pregnancy was punctuated with those bittersweet feelings as a new life grew inside her while she still grieved for Khushil and had flashbacks of being pregnant with him. Poignantly, she told her unborn child all about their special big brother and how she'd always longed to be a mother – a dream that came true when she gave birth to son Khushil on December 8, 2002.

'I finally had the most precious title in the world – Mum,' said Namrata.

'I'd sit on Khushil's bed in his room – which is exactly as he left it with all his wildlife and nature posters on the walls - and rub my bump, talking about their big brother and what he was like.'

As her pregnancy progressed, Namrata's bond with her unborn child got stronger, hand-in-hand with feeling even closer to Khushil.

'He'd always been so protective of me and it felt like he was still watching over us and had sent me another baby,' she said.

'We didn't find out the baby's sex – part of me wanted another boy while Bhavesh thought it might be better for us emotionally if we had a girl. But, most of all, we felt blessed I was pregnant and knew we'd love and treasure our baby whatever sex they were. Our family and friends were so happy for us when we told them were having another baby.'

On June 20 2019, Namrata gave birth to her daughter Khushi with Bhavesh at her side, revealing: 'It was so emotional and she was the image of Khushil as a baby – the exact same hair-line and profile.'

'The moment I looked into her eyes, I fell in love and felt the same overwhelming protectiveness I'd felt for Khushil.'

And they cherish every second with her even more after losing Khushil. Now Khushil's legacy of love is teaching Namrata how to be a mother.

She said: 'I fall more in love with my daughter every day and our house is filled with laughter again.'

'At first Khushi reminded me so much of Khushil but now she is developing her own personality – she's sweet and feisty - and, like her brother, I think she'll be very strong-willed,' she said.

'If people ask how many children we have, I say two because Khushil lives on in our hearts.

Namrata explained: 'He taught me how to be a mother – and a better person - I'll always feel privileged I was his mum. Our beautiful boy always be part of our family and would have adored Khushi – I'll tell her all about her big brother as she grows up.'